Misreading the Book of Charlie (#249)

Right before going to sleep tonight, Charlie got on his knees and peered under his bed. He resurfaced and, looking directly at me, said “I want.” Under the bed I found a worn copy of Goodnight Moon, a Barney book, a Teletubbies book, all of which I slid out.

Charlie barely glanced at them and again nearly rubbed his nose into the carpet as he looked under his bed. “Mommy! I. Want.”
I peered under and saw a small purple Beanie Baby that my sister had given Charlie six years ago: This was (as my sister had informed me) Millennium Bear, complete with a gold ribbon and a patch of the earth where the heart would be. “For my nephew’s collection,” my sister had smiled into the phone (Charlie being her one and only nephew).

Millennium Bear spent the first five years of the 21st century stuffed into a plastic bin in one of our basements. The only stuffed animal Charlie showed an interest in was the “I say 100 phrases!” Barney who my parents had given him on his first birthday–and who ended up in the garbage can along with the Barney videos after we noted repeated instances of Charlie watching a few minutes of the videos and Charlie head-banging–a puzzling association.

Charlie found Milllennium Bear a few months ago as I was going through the bins of toys in his room. “It’s the purple bear,” I said. “Barney,” said Charlie, staring at this find. Soon afterwards, I was not surprised to find “Barney” on Charlie’s bed to the left of his pillow, just where he used to place Barney and Alphabert, a toy computer.

At 3am Friday morning we heard a semi-loud knock, reached for the lights, and ran to check on Charlie, who was back-arching and writhing: A nightmare? Charlie resettled himself in our bed and was all smiles: “Hi! Hiiii! Hi! Hi! Hiiiiiii! Hi!” And wide awake and, therefore, ready for the bus at 7.15am, almost 45 minutes early. He ate two green apples, had one growl of anxiety, and traipsed in the icy slush of the front lawn until the bus appeared. He moved into Lesson 4–involving short words like “by”–in the Edmark reading program and got off the bus with an animated smile.

I could not forget his 3.15am wake-up time and how Charlie’s head might be spinning.

So when a bowl of chicken went flying and Charlie erupted, all of a sudden, into a high, keening cry that lasted for at least ten minutes and rapped the back of his head on the bookshelf, I was not unprepared. The strange crying and flailing occurred during Charlie’s ABA session even as he did all of his reading and other programs well. The therapist and I agreed to end the session early and, after dinner, donning his pajamas, and watching some TV with Jim, Charlie readily assented to “bedtime.”

I hypothesized that, due to Charlie having early dismissal from school yesterday, he woke up so early in part because he was extra-eager to go to school; he did keep on trying to look out the front window at 3.30, at 4.00, at 5.00 am. But after Charlie showed me the purple bear–“Barney”–under his bed it occurred to me: Was that what was going on at 3.15am this morning? The purple bear, a substitute for a very special toy that was long gone, had been missing at 3.15am and maybe Charlie had been asking for it but we had still been sleeping and had not heard him, until he had to resort, frantically, to other measures.

Such realizations that are really mysteries I don’t know if I’ll ever solve remind me of how far I am from understanding what is going on inside of Charlie. Just when I think I get it, it turns out that I have made an error in my translation. Just when I think I have become familiar in all things Autismland, I realize my astounding outsider‘s ignorance, and even arrogance, to think that I can have this knowledge.

A famous author puts it this way.

After a lengthy and extensive search….. I found [what] I least expected, and I then read….with great eagerness. I listened to you speak on many subjects, complain about many things, waver in your opinions…., and I who had long known the kind of preceptor that you were for others now at last recognize who you were for yourself. (from the Loeb Classical Library translation)

This is a passage from one of the Renaissance poet Petrarch’s “Letters to ancients,” Familiarium rerum libri 24.3.1, in which the Italian pre-modern addresses the ancient Roman orator, Cicero. The Latin for the final phrase is et qui iampridem qualis preceptor aliis fuisses noveram, nunc tandem quis tu tibi esses agnovi. From reading the Roman’s speeches and philosophical texts, Petrarch had once simply thought of Cicero as the great classical model of rhetoric and ancient philosophy. But after reading a just-discovered cache of Cicero’s personal letters to family and friends, Petrarch proclaims his rediscovery of a writer–an individual–he had thought he knew well. Now Petrarch knows or recognizes Cicero as “who you were for yourself.”

And learning not just to see Charlie as who he is for himself but to read the book of Charlie with an open mind and heart, ready to hear something contrary to my preconceived beliefs, is the gift of reknowing the world Charlie gives me everyday, in the many different languages of the head and of that heart.

I am amazed at how we as moms, especially those of us with children on the spectrum, can decode a lot of what our children are trying to tell us. It’s like an advanced level of unsolved mysteries, with a hint of CSI.

Gabe is slowly showing us pages to his “book” since he has started to comunicate. The tantrums though, are starting to escalate, as if he expects us to know what he is saying. It’s so frustrating! But, when you finally figure it out, it is the most satisfying feeling.

Always a mystery for us to analyze and do our best to translate in order to understand what is going on in our guy’s heads.

I wonder how much Charlie has heard people at school talking about his school closing. Perhaps he is understanding way more than some people give him credit for. Maybe this information that he has overheard is troubling him and causing the sudden outburts.